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AMA

I’m a mum of a child with cancer - AMA

54 replies

GoJetterGirl · 12/07/2018 11:23

Just that,

I’m a mum to a lovely little boy with cancer, over the past few years I have found myself answering questions that people can’t feel that they can/should ask and have encountered a lot of myths about childhood cancer, so, ask me anything....

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OhHolyJesus · 12/07/2018 11:29

I have no questions. I just send you my thoughts. I cannot imagine how life must be for you and your family.

KiplingAngelCake · 12/07/2018 12:07

Gosh, I am so sorry to hear this. A friend of my DH and his wife are going through something similar. I don't know the wife at all. What can we do to be supportive and helpful? Any advice welcomed.
Thank you and all the best to you and your family x

GoJetterGirl · 12/07/2018 12:23

Hi @KiplingAngelCake
The biggest support is having friends who are prepared to sometimes just listen, if your DH’s friend has children, offer assistance with them, I also found friends who sent along prepared meals for the freezer helpful, so I didn’t have to worry that my DH wasn’t eating while I was at the hospital with DS during chemo and surgery.

Wishing your friend the best, and thank you for your question xx

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Urbanbeetler · 12/07/2018 12:26

Sorry to her about you son.

What are the financial implications of having a child with cancer? Is there any financial support for families going through this?

tenredthings · 12/07/2018 12:29

So sorry to hear about your situation, How do you talk to your son about what's happening to him ?

elliejjtiny · 12/07/2018 12:39

So sorry about your little boy having cancer.

As a mum with a child with long term health issues requiring multiple operations I get a lot of "at least your child doesn't have cancer" or "you're lucky he hasn't got cancer" from insensitive idiots whose dc are perfectly healthy. Just wondering if anyone has told you that you are lucky your ds hasn't got something else and if so what the something else is?

Is your ds an inpatient a lot and how you manage the practicalities like washing clothes, feeding yourself etc while you are in hospital?

GoJetterGirl · 12/07/2018 13:26

What are the financial implications of having a child with cancer? Is there any financial support for families going through this?

Financially, we are disadvantaged, I had to stop work, and ultimately resign from my post when it became apparent that DS wasn’t going to get any better, you only become ellegible for DLA and carers allowance 3 months after the date of diagnosis, so for 3 months, we lost my income and had no financial help, due to DH’s earnings, we didn’t become eligible for additional help such as tax credits.

However, there is a lovely charity called Clic Sargent, that assigns a social worker to each child when diagnosed and they help with applying to funds to help bridge the gaps and help financially.

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GoJetterGirl · 12/07/2018 13:29

How do you talk to your son about what's happening to him ?

Every parent takes a different approach, we have been honest with DS and were provided with support from play specialists, child psychology and our Clic worker, he understands that sometimes our bodies fight against us and that the treatment would hopefully have made him better.

Currently, he is now terminally ill, we haven’t told him as he is still doing pretty well and we ant him to still thrive, rather that to wonder how long he has, we have a brilliant palliative care team who minister him say by day and adjust his pain relief, antiemetic sand anti anxiety meds to ensure that he is comfortable.

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GoJetterGirl · 12/07/2018 13:36

*As a mum with a child with long term health issues requiring multiple operations I get a lot of "at least your child doesn't have cancer" or "you're lucky he hasn't got cancer" from insensitive idiots whose dc are perfectly healthy. Just wondering if anyone has told you that you are lucky your ds hasn't got something else and if so what the something else is?

Is your ds an inpatient a lot and how you manage the practicalities like washing clothes, feeding yourself etc while you are in hospital?*

I have come across that, and I too found it so frustrating, things such as “at least he doesn’t have diabetes, asthma, life threatening allergies etc etc” I genuinely find that it’s due to people being misinformed or not knowing enough about childhood cancer and sometimes it not knowing what to say.

The hardest response I’ve ever had was from a parent at the school... “how is DS doing?” “His scans are back and he’s been classed as terminally ill” “I’m sure he will get better if you pray to God more often”

With regard to feeding myself and laundry etc, I kept a ptepacked bag with clean clothes for a whole week, and staple foods such as pot noodles, bottle of squash, and my wash gear for myself and DS, I would venture out into the city while DS slept at night and usually end up with Mcdonskds or local takeaway, but it did add to the financial strain, for weeks at a time I’d be raking takeaway every night, where before it would be a once a month/wedding anniversary/ birthday treat for DH and I

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Zoflorabore · 12/07/2018 13:43

Hi op, so sorry to hear about your little boy.

Can I ask how old he is please?

Also, you mentioned that the latest scans show that he is terminal, does that mean there is nothing else that can be done or that he is having treatment to lengthen his time? How on earth you cope I do not know.
You must be so bloody strong. I am a real worrier and my biggest fear is losing one of my children. My heart breaks for you. Flowers

GoJetterGirl · 12/07/2018 13:54

*Can I ask how old he is please?

Also, you mentioned that the latest scans show that he is terminal, does that mean there is nothing else that can be done or that he is having treatment to lengthen his time? How on earth you cope I do not know.
You must be so bloody strong. I am a real worrier and my biggest fear is losing one of my children. My heart breaks for you. flowers*

DS is 5,

He’s been fighting since he was diagnosed just after his 3rd birthday, realistically speaking, had I not been fobbed off by the GP several times, made to feel as if him not being himself and there being something wrong was all in my head, maybe the outcome would be different.

There is no further treatment that can be offered for DS and palliative chemotherapy was giving him more problems symptom wise than was fair on him, so his father and I decided to stop treatment altogether and bring him home to die, he is surrounded by the people he loves and will pass knowing that we tried everything.

We did hit a lot of resistance and hateful reactions from family members who disapproved of us saying that he has had enough and we were stopping the palliative chemotherapy, needless to say, these people are now LC.

As for how I do it? I do it for him, because all he knows is that mummy has his back, and as long as his mummy is happy and able to play, and be there with him, then everything is ok, and that’s all I need him to feel.

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EmmaGrundyForPM · 12/07/2018 14:03

GoJetter I am so sorry for you and your family. You sound like you are an amazing woman and mummy.

One of my friends sadly lost her son to cancer a few years ago. She and her dh made the decision not to tell anyone other than their parents when he became palliative as they did not want him to learn of the diagnosis (he was 9). They felt that if the news got out, he would perhaps hear it from a friend at school or whatever, also he had an older sibling and they didn't want her to know either. So it came as a real shock to all their friends when he died. I absolutely understand why they took that decision but it must have been so lonely for them.

Do you have other children and, if so, what have you told them ?

Thinking of you

Urbanbeetler · 12/07/2018 14:08

I think you are so, so right to do what you have done. Quality of life rules quantity.
What sorts of things are you enjoying with your son at this stage? Can he get out and about or is he better in or near home?

highchairhell · 12/07/2018 14:10

I was going to say how sorry I feel for you but then realised that no, you don't need sympathy because you are amazing and you are lucky to have/ have had your son in your life just like he is lucky to have you as a mother. You are making his life enjoyable and fun and I'm sure he is a delight so how can there be sorrow in that. I don't believe in god but I do believe that our souls live on in the hearts of those who loved us so you will never without him xxx

GoJetterGirl · 12/07/2018 14:14

One of my friends sadly lost her son to cancer a few years ago. She and her dh made the decision not to tell anyone other than their parents when he became palliative as they did not want him to learn of the diagnosis (he was 9). They felt that if the news got out, he would perhaps hear it from a friend at school or whatever, also he had an older sibling and they didn't want her to know either. So it came as a real shock to all their friends when he died. I absolutely understand why they took that decision but it must have been so lonely for them.

Do you have other children and, if so, what have you told them ?

As DS spent every second he could manage between treatment stages at school, we had to let the school know of his prognosis, we had a lot of support from them and they took our wishes into account every step of the way. Due to DS being on treatment when he started at the nursery, his peers were already well versed in the fact that he has a central line, bald head, feeding tube etc, so physically, to his peers, he still looks the same, when I was at the school the other day (volunteer) one of his friends asked how he was, I said he was ok, just tired, the little sweetheart looked me in the eye and said “don’t worry mrs (my name) he was always a bit tired at school, he told me he has to get tired to get better”

The school has a policy in place ready for the day I wish would never come, it includes support for his peers, staff and DH and I.

I have a baby DS, (who the inlaws heavily criticised me for having, and still refer to him as DS’s replacement- but as I said, LC now) we are taking loads of pictures and videos, they have identical teddies they sleep with and when DS passes, Theodore Edward bear will go to baby DS.

I do completely understand your friends views, and as I said upthread, every cancer parent is different in the choices they make, this way just seems best for us.

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GoJetterGirl · 12/07/2018 14:19

What sorts of things are you enjoying with your son at this stage? Can he get out and about or is he better in or near home?

We’ve had the garden adapted so he can access it in his chair, and most days we carry him downstairs and spend the day playing with his go jetters. Even tho he no longer eats, we make his favourite food from time to time and his pressed it to his lips so he gets the taste from it. We like puzzles and drawing, trains a plenty, and we very often take him out and about doing day to day stuff such as walks to the local shop and park (which I’m working on getting adapted for wheelchair users)

If he finds somewhere staring at him while he is out, he turns to them, asks them if they mean to be so rude and informs them to google “be child cancer aware” Grin (he’s still got his cheeky side)

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EmmaGrundyForPM · 12/07/2018 14:23

I can't believe anyone could be so crass as to refer to your baby as a "replacement".

Your son's school sounds really good.

Yes, every family's circumstances is unique. I always felt my role as a friend was to support and not to query any decisions they made as only they knew what they were going through, and what was right for their family.

GoJetterGirl · 12/07/2018 14:26

Thank you @highchairhell

Us oncology parents have a saying,

“Without cancer, my life would be perfect, but, if it wasn’t for cancer, would I even know it?”

And it’s just that, it wasn’t until my DS became unwell that I became aware of how much of my time I was devoting to things that don’t really give me joy, or add to my life in any way,

I’m lucky every morning when I go into DS’ room and he’s made it another day, when he is able to get the energy to take a small stroll round the garden, his delight at receiving a letter from his classmates and when his friends visit.

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Urbanbeetler · 12/07/2018 14:33

As a teacher, what could I do to support a hypothetical but perhaps one day, real student I have been teaching with cancer in the terminal stages?

GoJetterGirl · 12/07/2018 14:40

As a teacher, what could I do to support a hypothetical but perhaps one day, real student I have been teaching with cancer in the terminal stages?

Hi, for most children in DS’s position, they do really miss the social aspect that school fulfilled for them, DS’s teachers take it in turns to visit him during lunch time (we live next door to the scool)

We also write emails to his friends at school and use an app designed to track a child’s learning journey that allows pictures and videos to be shared between Home and classroom...

As a parent, one of my biggest fears is my child being forgotten, by keeping up the relationship with his school (he is Home educated by our LA now for an hour a day) it reassures DS that his friends and the important people he has built relationships with over time have not forgotten him.

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MrsElijahMikaelson · 12/07/2018 14:46

I don't have a question, just wanted to say i am so sorry for you and your family. You don't need the extra stress of people's opinions.
Have as many bbabys as you like, he still wouldnt replace your son and only an ignorant fool would know that.

You sound incredibly strong.

A friend of mine, her brother was diagnosed with skin cancer and he was 17. No comparison just that he too was being fobbed off by the GP who were giving him shampoos and sending him on his way. They tried to sue doctors but weren't succesful. It gets me so angry and worried.

I've spent all morning doing house work instead of playing with DS. It just makes you think.

Sorry for the rambling, my thoughts are with you and your family

Itchytights · 12/07/2018 14:46

Hugs op.

Big big hugs Flowers

What a wonderful Mother you are

LegoPiecesEverywhere · 12/07/2018 14:54

I am so sorry op. You say you were fobbed off by your GP. What symptoms was he displaying? Did you know in your gut something was seriously wrong?
Flowers

AvonCallingBarksdale · 12/07/2018 15:01

No questions, just want to say thinking of you and your family. Close friends went through similar with their DS some years ago. We talk about him a lot.

GoJetterGirl · 12/07/2018 15:01

You say you were fobbed off by your GP. What symptoms was he displaying? Did you know in your gut something was seriously wrong?

Tiredless,
Constant infections,
Sweating at night,
Complaining of pain (calpol wasn’t helping, and wouldn’t settle) (GP attempted to say I wasn’t bonding with him)
Looking very pale, (gp said that because I’m fair, DS just takes after me)
Not eating,
And the thing that be child cancer aware lists as very important: I knew something wasn’t right, and was concerned.

You can find a full list of symptoms to be aware of at Be Child Cancer Aware

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